POLICY PAPER Early Diagnosis of Autism in the United

POLICY PAPER Policy Paper 34 January 2020

EXECUTIVE SUMMARY Early Diagnosis of Autism in Autism is a lifelong neurodevelopmental disorder that is characterized by impaired the United Arab Emirates: social interactions, verbal and nonverbal communication, and stereotyped, Autism Knowledge and repetitive behaviors. While the Autism prevalence in the United Arab Emirates (UAE) is comparable to that observed in Attitudes Among Primary other countries, children in the UAE are being diagnosed later as their conditions Healthcare Providers in are not being detected by the available pediatric healthcare oversight protocols Ras Al Khaimah or being reported by parents. Pediatricians and parents are at the best vantage Agata Wentz, Pedagogical University of Krakow, Poland point to spot the earliest warning signs of autism. If the disorder is detected in Introduction its infancy, early intervention programs An estimated one in 68 children in the United States is identified with autism, a can help ameliorate the symptoms neurodevelopmental condition that is part of a continuum of disorders collectively significantly. This study provides insight known as autism spectrum disorders (ASD). Autism is one of the most expensive medical into the important issues impacting conditions for the country and, furthermore, one of the most common causes of disability autism’s early detection in the UAE, using among children in the world (CDC, 2013). The World Health Organization (2019) estimates the emirate of Ras Al Khaimah as a case that an average of one in 160 children worldwide has ASD. However, this is only an study to better understand and mitigate average, and estimates of the prevalence of autism vary substantially across studies local phenomena that might be delaying depending on diagnostic criteria, age of the children screened, and geographical location. diagnosis, negatively impacting the future of autistic children and their families. In addition, despite the fact that estimated prevalence rates of ASD vary across regions, and that the numbers from many low-and middle-income countries are still unknown, the global prevalence of ASD appears to be dramatically increasing. This increase is estimated, based on epidemiological studies that analyze the incidence and distribution of ASD conducted over the past 50 years (WHO, 2019). This apparent increase may be explained by improved awareness, expansion of diagnostic criteria, improved diagnostic tools and practices, and better reporting (Newschaffer, 2007). Another hypothesis is that all above-mentioned factors, including better ascertainment, especially for children at the less severe end of the spectrum, explain only a part of the linear increase observed. Indeed, numerous studies support the evidence suggesting a contribution of environmental risk factors (Chaste & Leboyer, 2012). Therefore, it is reasonable to assume that there may be both a real increase in the number of autism cases and an increase in the ASD detection in children. ‘’Autism’’ was first described, clearly defined, and used as a diagnostic term by Leo Kanner, a child psychiatrist from Johns Hopkins University Hospital in the United States in 1943 (Kanner, 1943). Since Kanner’s first publication on autism over 75 years ago, the vast majority of the global research concerning the spectrum of autism has been conducted in the Anglo-Saxon world. This creates an illusory and fundamentally false impression suggesting that autism is a phenomenon the scale of which is alarming in the western world and virtually non-existent in non-western societies (Mostafa, 2011). In the Arab world, ASD has been a topic of discussion since the late 1990s. Yet, the current state of epidemiological studies of autism conducted, especially in the Gulf Cooperation Council countries (GCC), highlight that there Overview of Autism and its are gaps in the literature, research agendas, and public Socioeconomic Impacts health policies and practices related to the theoretical, practical, and therapeutic components of ASD diagnosis, With a growing body of research and frequent changes management, and widespread familial and societal of diagnostic criteria, clinical definitions of autism impacts. Furthermore, few researchers have addressed the constantly evolve. The current Diagnostic & Statistical 2 issue of autism diagnosis in the GCC and the critical role Manual of Mental Disorders (DSM-5) by the American of primary healthcare professionals in the process. Early Psychiatric Association describes autism as a lifelong detection is essential for early intervention, which can neurodevelopmental disorder that is characterized by help ameliorate the symptoms significantly, improving impaired social interactions, impaired verbal and non- the quality of life for families and the prognosis of ASD verbal communication and stereotyped, repetitive sufferers. In fact, one influential study in the United Arab behaviors (DSM-5, 2013). Symptoms may include, among Emirates (UAE) highlighted worrisome trends, such as others: unresponsiveness, self-abusive behaviors, learning the lack of timely diagnosis and a sustainable screening to speak relatively late, intense focus on one item, scheme (Eapen, 2007), which have negative impacts on avoidance of eye contact and social withdrawal. Autism the effect of subsequent interventions. Such impacts lead may significantly limit the child’s capacity to conduct to lifelong impairments that were potentially treatable if daily activities and develop self-help skills such as self- caught early enough. feeding, independent dressing and grooming, hygiene and toileting, or helping with daily chores. The severity of these Early symptoms of autism and the awareness thereof symptoms varies widely among affected individuals, and among pediatricians and general practitioners, the it is important to note that not all individuals with ASD use of screening tools,1 and issues concerning timely experience all of the symptoms listed. This is because, as referral to early intervention providers are a neglected previously mentioned, the condition is part of a continuum area in the field of ASD research in the GCC and, as of disorders collectively known as autism spectrum highlighted above, in the UAE. Thus, there is a need to disorders (ASD) and is classified under the general category better understand opinions, perceptions, and concerns of of pervasive developmental disorders (PDDs). primary healthcare providers regarding autism spectrum disorders in order to fill the gaps in the screening and The etiology of autism is still a matter of speculation. Many diagnostic processes of ASD. researchers agree that the causes of autism are likely to be genetic3, although the genetic linkage is complex and This study provides insight into the factors impacting has been inconclusive. Others have suspected that the autism’s early detection in the UAE, using the emirate of factors are biochemical, neurological, and environmental Ras Al Khaimah as a case study to better understand local (Amaral, 2017). Most experts agree that there is no cure phenomena that might be significantly delaying diagnosis. for autism. The current treatment options are limited to The paper first provides an overview of what autism is, the management of core symptoms or development of as well as its regional epidemiology and socioeconomic skills, which includes behavioral and educational therapy. impacts. It then investigates the level of knowledge and No medication is approved for use in treating the core awareness of the key aspects of autism among children’s symptoms of ASD. However, some evidence exists that one primary healthcare providers, which are pediatricians and medication, risperidone4, may be effective in treating the general practitioners, practicing in various locations of Ras repetitive and restricted patterns of behavior in children Al Khaimah. It also provides recommendations to address with autism (DeFilippis & Wagner, 2016). questions of access to continuing education on ASD- related subjects, the use of autism screening tools, and The most commonly used evidence-based treatments for community awareness. children with autism are: Speech and Language Therapy,

1 Screening tools can be specific to a disorder (for example, autism: STAT, MCHAT) or an area (for example, cognitive development, language, gross motor skills: PEDS, CSBS, ASQ). Screening tools, by definition, are not designed to provide a conclusive evidence of a disorder. Their aim is to help identify children who might have a disorder. A positive screening result should be followed by an in-depth assessment. 2 DSM is the handbook used by healthcare professionals in the United States and much of the world to diagnose mental health conditions. An alternative classification system to DSM is International Classification of Diseases (ICD) by the World Health Organisation. 3 The recurrence risk of autism in siblings of ASD-affected children is estimated to be between 10% and 20% (Szatmari et al., 2016). 4 Risperidone appears on the list of restricted and controlled drugs in the United Arab Emirates. Retrieved from: https://www.government.ae/en/information-and-services/ health-and-fitness/drugs-and-controlled-medicines/controlled-medicines- Sheikh Saud bin Saqr Al Qasimi Foundation for Policy Research Sheikh Saud bin Saqr Al Qasimi Foundation for Policy

2 Applied Behaviour Analysis (ABA), Cognitive Behaviour add to them by staring, commenting and making our life Therapy (CBT), and Occupational Therapy. All of these are more difficult…Perhaps you can’t say a few good words. legal and available in the UAE (Kelly, 2016). Regardless of You can’t help [us]. But please don’t criticise or judge’’ the therapeutic option chosen, emphasis should remain on (Gulf News, 2016). early detection of ASD that may provide an opportunity Many children with ASD living in the UAE do not attend for early intervention, which has been considered ‘essential special needs schools because their caregivers cannot to achieving the best outcomes5 (Pierce, Courchesne, & afford the extremely high school fees. Regarding inclusive Bacon, 2016). Early intervention may have the best chance education for ASD-affected children, one parent stated of altering neural connectivity at a time of optimal brain that ‘’as for inclusion, we’re so far behind. We’ve been plasticity (Pierce et al., 2016). rejected from so many schools without them even giving The disorder imposes significant economic burdens on a chance for assessment. As soon as they hear ‘autism’, it’s countries and families of affected children. Autism’s a ‘no’ or ‘we’re full’ ‘’ (Arab News, 2019). In order to solve economic cost in the United States was estimated at $268 this problem, the Knowledge and Human Development billion in 2015 and will potentially rise to $461 billion Authority (KHDA), Dubai’s education regulator, has by 2025 in the absence of more effective interventions launched new guidelines stating that all private schools in and support across the lifespan of the individual with Dubai must be able to cater for special needs children by ASD (Autism Speaks, 2017). In addition, a 2014 study 2020 (The National, 2019). on the economic costs of ASD in the United States and the United Kingdom found autism to be the fourth most ASD Prevalence Rates in the GCC expensive medical condition across the two countries, Statistical studies concerning autism prevalence rates beyond only trauma, cancer, and cardiovascular disease in the GCC states – Bahrain, Kuwait, Qatar, Oman, Saudi (Buescher, 2014). The economic cost of ASD and its social Arabia, and the UAE – have only been conducted in half of implications in the UAE and the greater Gulf region remain the countries. The published statistics of the epidemiology unresearched. However, according to estimates by Dubai- of autism concern Bahrain (Al-Ansari & Ahmed, 2013), based experts the costs can range from Dh 4,000 to as Oman (Al-Farsi et al., 2011) and the UAE (Eapen et al., much as Dh 40,000 a month for every ASD-affected child 2007), and are the first, and to date only, studies of their (The National, 2014). kind in the history of the region. A lack of publications Furthermore, while all of the evidence-based therapies persist concerning the scale of the phenomenon in Kuwait, are available in the UAE, a major difficulty for families Qatar, and Saudi Arabia. is access to them, as they are often unaffordable and Table 1 presents a comparison of the size of population inflexible (e.g. not being home-based or close-to-home). with the number of diagnosed cases of autism in each Most specialized autism centers (such as the Dubai Autism GCC state. The lack of data in three cases, as well as the Center founded in 2001 and the largest facility of its kind markedly low statistics for prevalence in the other three in the UAE) operate at full capacity, have long waiting (in comparison, the median for Europe is 18.75 per 10,000 lists, and only offer care until the child turns 18 years of individuals; for the United States. it is 21.6 per 10,000), age. As mentioned earlier, autism is a lifelong condition. clearly show that our knowledge of autism spectrum Individuals with ASD do not ‘outgrow’ autism. They need disorders’ epidemiology in the Arab Gulf region is based on services and support throughout their lifetime. very limited data. Despite the increasing media attention autism spectrum disorders have gained both around the world and in the In the case of the UAE, the first and only report on the UAE over the years, many ASD-affected families face a epidemiology of autism in the community reported a societal lack of compassion and understanding. Common weighted prevalence of 29 per 10,000 among three-year- reactions of mainstream society include staring, making olds (Eapen et al., 2007). While the rate reported from the hurtful remarks, and interpreting some of the typical ASD- UAE is comparable to that observed in other countries related behaviors as outcomes of poor parenting. These worldwide, none of the UAE children diagnosed during the reactions and stigmas surrounding autism further deepens study had a prior diagnosis. All of them escaped detection the distress experienced by the individuals with ASD and by the available and required pediatric healthcare oversight their families. During an emotional interview given to Gulf protocols. It is, however, critical to detect the disorder in News, a UAE-based family of a child with ASD pleaded its infancy - behavioral signs and delays associated with that, ‘’we are already struggling physically, spiritually, autism can be identified at 18 months of age, if not earlier mentally, financially. These are burdens enough. Do not (Bryson, 2004).

5 Sustained improvements after early intervention have been indicated by recent follow- up data. For example, two-year follow-up postintervention with the Early Start Denver Model (ESDM) found improved core autism symptoms at six years of age (Estes et al., 2015). See also research by Green et al., 2017; Pickles et al., 2016) for randomised controlled trials (RCT) demonstrating symptom reduction at long-term follow-up. Early Diagnosis of Autism in the United Arab Emirates: Knowledge and Attitudes Among Primary Healthcare Providers Ras Al Khaimah

3 Table 1. Epidemiology of autism in the GCC states

Estimated population (in millions), 2017 GCC state Published statistics for the epidemiology of autism (source: World Bank)

Bahrain 1.49 4.3 per 10,000 (Al-Ansari & Ahmed, 2013)

Kuwait 4.13 13

1.4 per 10,000 (Al-Farsi, Al-Sharbati, Al-Farsi, Al-Shafaee, Oman 4.63 Brooks, & Waly 2011)

Qatar 2.63 -

Saudi Arabia 32.94 -

UAE 9.4 29 per 10,000 (Eapen, Mabrouk, Zoubeidi, & Yunis, 2007)

Methodology interventions, this knowledge, however, often does not This cross-sectional study evaluates the level of knowledge necessarily ‘filter down’ to primary healthcare providers and awareness about the various aspects of ASD among (Levy, 2009). pediatricians and general practitioners practicing in Pediatricians and/or general practitioners are the first urban and semi-urban/rural areas of the emirate of Ras group of medical professionals that parents report to 6 Al Khaimah. The study included 87 doctors practicing in with all health-related concerns. These professionals are both private and public outpatient clinics and hospitals also responsible for required ASD screening protocols. It is and all those surveyed specialized in one of the two fields, therefore crucial for pediatricians and general practitioners pediatrics and general practice, which together form a to have adequate knowledge of developmental disorders, very important professional group with regards to autism use screening tools, and refer cases to early intervention spectrum disorders’ screening and referral for a further providers, as it can enable the timely and correct diagnosis diagnosis. Pediatrics and general practice are usually the of autism and help ameliorate the symptoms significantly. first and most commonly used point of access to healthcare In order to better understand the factors impacting for parents of young children. autism’s early detection in the UAE, this section reviews A mixed-method, social scientific, case study approach was the level of knowledge about ASD among pediatricians and also used in order to collect the data for this study. This general practitioners in Ras Al Khaimah, as well as their included semi-structured interviews with all the doctors, opinions and perspectives regarding ASD-related topics. as a follow-up procedure to the questionnaire utilized7 , as well as semi-structured and more in-depth interviews with Level of knowledge about ASD among seven key stakeholders, including employees in the health pediatricians and general practitioners in and higher education sectors in Ras Al Khaimah. Ras Al Khaimah Findings To better understand the knowledge and awareness of Despite the fact that over 70 years have passed since Leo ASD among healthcare providers in Ras Al Khaimah, a Kanner first described and defined autism, the disorder questionnaire on key concepts of autism was administered still has not been examined thoroughly, especially in to the participating pediatricians and general practitioners. countries such as the UAE, where the impact of culture and Table 2 shows the numbers and percentage (n, %) of traditions on public healthcare is more significant. While respondents who gave correct answers, wrong answers, or there has been much progress in understanding autism and did not respond to the questionnaire’s questions8. Additional the critical role of the early diagnosis and intensive early context and implications of the findings are discussed.

6 Apart from the capital city, Ras Al Khaimah, the study included some of the most important towns and settlements of the Ras Al Khaimah emirate, namely Al Jazirah Al Hamra, Al Rams, Khatt, Diqdaqah, Al Qir and Sha’am. 7 It consists of 22 statements, one could choose either ‘agree’ or ‘disagree’, depending on the answer one considered to be correct. The questions 1-14 and 22 referred to some of the key issues in autism’s etiology, symptoms, diagnosis, comorbid disorders and prognosis. The questions 15-21 concerned opinions and perspectives based on individual experience of the respondent and are included in Table 3. 8 Statistical test results for questions 1-14 & 22: 1. λ2(2)=45.31; p<0.001, 2. λ2(2)=62.55; p<0,05, 3. λ2(2)=38.55; p<0.001, 4. λ2(2)=79.1; p<0.01, 5. λ2(2)=57.38; p<0,05, 6. λ2(2)=69.59; p<0.001, 7. λ2(2)=61.31; p<0,00, 8. λ2(2)=72.62; p<0.001, 9. λ2(2)=56.48; p<0.001, 10. λ2(2)=46.83; p<0.001, 11. λ2(2)=38.55; p<0,05, 12. λ2(2)=38.55; p<0.001, 13. λ2(2)=124.62; p<0.001, 14. λ2(2)=69.59; p<0.001, 22. λ2(1)=29.9; p<0.001 Sheikh Saud bin Saqr Al Qasimi Foundation for Policy Research Sheikh Saud bin Saqr Al Qasimi Foundation for Policy

4 Table 2. Knowledge and awareness about ASD among primary healthcare providers in Ras Al Khaimah9

Questions (answer) Correct Correct Wrong Wrong No answer No answer (n = 87) answer n= answer % answer n= answer % given n= given %

1. Autism is a lifelong condition (yes). 56 64% 26 30% 5 6%

2. Autistic children’s withdrawal is mostly 62 71% 22 25% 3 4% due to cold, rejecting mother (no).

3. Autism is an emotional disorder (no). 46 53% 39 45% 2 2%

4. It is impossible to tell if a child is autistic 67 77% 18 21% 2 2% before 4 years of age (no).

5. Autism is a developmental disorder (yes). 61 70% 21 24% 5 6%

6. Autism exists only in childhood (no). 64 74% 21 24% 2 2% 7. Even with early intervention, the prognosis for independent community functioning of 61 70% 24 28% 2 2% autistic individuals is poor (no). 8. With the proper treatment, most autistic 20 23% 65 75% 2 2% children eventually ‘’outgrow’’ autism (no). 9. The onset of autism occurs before 36 59 68% 26 30% 2 2% months (yes). 10. Most autistic children are also 54 62% 31 36% 2 2% intellectually disabled (no).

11. Most autistic children are nonverbal (no). 39 45% 46 53% 2 2%

12. Language delays in autism are due to 46 53% 39 45% 2 2% intellectual disability (no). 13. Autism can occur in mild as well as 78 90% 7 8% 2 2% extreme forms (yes). 14. Most autistic children have special 21 24% 64 74% 2 2% talents or abilities (no).

22. Autistic children are ‘’untestable’’ (no). 69 79% 18 21% 0 0%

In the first question of the questionnaire, 64% of the Questions 8 and 14 had the highest percentage of incorrect respondents marked correctly that autism is a lifelong responses (see Figure 1). The current state of scientific condition. As much as 6% felt that they didn’t know the knowledge on curability of ASD is that a cure for autism correct answer. It is extremely important for the primary is not available. Autism is a pervasive disorder, which healthcare providers to deeply understand the persistent begins in childhood and tends to persist into adolescence nature of this developmental disorder in order to provide and adulthood. However, numerous evidence-based a more informed guidance for the families who often interventions exist, such as behavioral treatment, speech- fall victim to fraudulent therapies and false claims of language therapy and skills training programmes that con artists who prey on desperate parents by promising can significantly reduce difficulties in social behavior and them a ‘cure’ for autism. Regarding the second question communication, improving child’s well-being and quality concerning causes of autism, one quarter of respondents of life. wrongly indicated a causal association between autistic behaviors and lack of love on mothers’ part. Refrigerator Question 14 was on a savant syndrome, a condition mother theory, according to which autism was primarily where prodigious talents and unique abilities co-occur caused by emotional neglect and withholding of affection, with autism. Savant syndrome concerns not more than was formed in the 1950s and early 1960s, in the absence approximately 10% of the entire ASD-affected population. of any biomedical explanation of autism’s cause. It went Portrayals of autism in popular culture, mainly in film and unchallenged into the mid-1960s until researchers television, often depicting autistic children as individuals ultimately refuted and discredited this theory. being able to crack advanced codes, play music by ear

9 The intensity of the colour used in the table is directly proportional to the number of wrong answers given by the respondents. 50% and above of incorrect answers: light grey, 30%-50%: gold, 29% and below: light gold. Early Diagnosis of Autism in the United Arab Emirates: Knowledge and Attitudes Among Primary Healthcare Providers Ras Al Khaimah

5 Figure 1. Percentage of incorrect responses on questions 8 and 14

after a single hearing, or draw highly detailed scenes Analysis10 of participants’ responses did not show the from memory, contribute to dangerous generalizations presence of statistically significant differences between and false perceptions of autism also among primary the level of knowledge about ASD presented by the primary healthcare providers. healthcare providers practicing in the main metropolis and by the doctors working in more remote areas of Ras Question 9, pertaining to the early onset of ASD, was Al Khaimah. This finding indicates the lack of significant marked correctly by 68% of respondents, while 30% found rural-urban disparities in autism knowledge and awareness that the symptoms occur after three years of age, and a among doctors. However, there may be other factors further 2% didn’t know how to respond. The timing and potentially obstructing preventive services such as the intensity of early symptoms vary widely, which is why ASD screening procedure in the rural/suburban context. professional evaluation is crucial. In the next question, 36% For example, greater distance to healthcare services may of respondents wrongly linked the majority of autism cases reduce visit frequency, or access to resources and care with intellectual disability. Only about 31% of children coordination may be inadequate, as some interviewed with autism have an intellectual disability (intelligence doctors suggested (personal communication, 2019). In quotient [IQ]<70) (Autism Speaks, 2019). conclusion, efforts to improve early ASD detection should It is interesting to note that both questions pertaining to consider the barriers and challenges unique to rural, language and communication in children with ASD, namely suburban, or urban areas. questions 11 and 12, revealed the highest percentages of divergence. 90% of respondents indicated correctly that Opinions and perspectives regarding ASD- autism can occur in mild as well as extreme forms. 21% related topics among pediatricians and were in favor of the false statement that autism spectrum general practitioners in Ras Al Khaimah disorders can’t be tested in any way. To better understand the opinions of healthcare providers In conclusion, physicians’ knowledge about autism in Ras Al Khaimah, the statements seen in Table 311 were spectrum disorder varies depending on the topic and is, included in the questionnaire. These perspectives are in many aspects, insufficient to competently carry out an important to understand, as they highlight the perceived autism screening procedure that is required for every child status of the field, and allow for a tailored dialogue that in Ras Al Khaimah visiting a doctor at 18 months. increases the buy-in of practitioners for potential reforms and capacity building. Table 311 presents the numbers and The lack of rural/urban disparities in autism percentage (n, %) of respondents who agreed, disagreed, knowledge and awareness among doctors in or gave no answer to each statement.12 Ras Al Khaimah The study found that three-quarters of respondents did An important socioeconomic public health consideration not feel that ASD cases occur less frequently in the UAE is location, such as the comparison of the quality and compared with western countries, while 6% of respondents availability of services provided in rural or urban settings. did not provide comment. Four decades ago, researchers

10 Mann-Whitney U test: U = 567.5; p> 0.05; Out of 15 possible correct answers to give, the average of correct responses in the study group was 9.23 ± 2.11 points, which is 61.53 ± 14.08% 11 The intensity of the colour used in the table is directly proportional to the number of ‘agree’ statements given by the respondents. 50% and above of agreeing responses: gold, 30%-50%: light grey, 29% and below: light gold. 12 Statistical test results for statements 15-21: 15. λ2(2)=69.52; p<0.001, 16. λ2(2)=89.86; p<0.001, 17. λ2(2)=75.41; p<0.001, 18. λ2(1)=0.02; p>0.05, 19. λ2(1)=17.48; p<0.001, 20. λ2(2)=52.14; p<0.001, 21. λ2(1)=79.18; p<0.001 Sheikh Saud bin Saqr Al Qasimi Foundation for Policy Research Sheikh Saud bin Saqr Al Qasimi Foundation for Policy

6 Table 3. Opinions and perspectives on autism spectrum disorders among primary healthcare providers in Ras Al Khaimah

Question No. Disagree Disagree No answer No answer Agree n= Agree % (n = 87) n= % given n= given %

15 Autism is a rare condition in this country as 17 19% 65 75% 5 6% compared with the West. 16 There is a lack of awareness regarding autism 70 81% 15 17% 2 2% among healthcare professionals in the UAE.

17 Autism is under-recognized and often missed 84 96% 3 4% 0 0% in general practice.

18 Pediatricians and GPs are taught how to spot 43 49% 44 51% 0 0% early autism symptoms.

19 I have tools to diagnose autism. 24 28% 63 72% 0 0%

20 There are workshops and trainings on autism 23 26% 59 68% 5 6% available for professionals in Ras Al Khaimah. 21 A cooperation and exchange of information with speech language pathologists and 85 98% 2 2% 0 0% psychologists would be useful. associated ASD mainly with technologically developed in Ras Al Khaimah, suggesting that training needs among nations. The current evidence of increased prevalence of doctors remain largely unmet. Furthermore, nearly all of autism in developing countries proves this assumption the subjects who completed the questionnaire (98%), wrong. In addition, the majority of respondents (81%) commented that cooperation and exchange of information believe that, in general, awareness regarding ASD among with speech language pathologists and psychologists healthcare professionals in the UAE is lacking, and that would benefit their practice. ASD is under-recognized and often missed in general Analysis on Question 16 on autism awareness found practice. Only very few study participants (4%) disagreed statistically significant differences.13 Doctors who with the latter statement. These numbers underline the disagreed with this statement and felt that the overall importance of continuing education on ASD for primary autism awareness of local healthcare professionals is healthcare providers across the emirate. sufficient, obtained statistically significantly higher In response to statement 18, respondents gave divergent percentage of correct answers given14 compared to doctors answers. Forty-nine percent of respondents replied that who expressed doubts about the level of autism awareness pediatricians and general practitioners are taught how within their professional field.15 This finding demonstrates to spot early ASD symptoms, but just over half (51%) of a noteworthy association between self-perceived and those surveyed did not share this view. These differences objectively measured knowledge. can be accounted for in part by different educational The results of this part of the study seem to demonstrate experiences of participants and different standards in that the majority of pediatricians and general practitioners medical schools’ curricula, but they highlight the need in Ras Al Khaimah do not feel sufficiently equipped with for standardization across curriculums, certification knowledge about childhood ASD and do not have or know requirements, and regulations. of any easy-to-use screening tools they could confidently Seventy-two percent of respondents indicated that they administer in their daily practice. Also, an overwhelming do not have tools to diagnose ASD. When respondents sense among respondents was that there are unmet needs were asked whether they use or are familiar with any in terms of continuing medical education and policy ASD screening tools, the answer was negative for all of making with regards to ASD, especially, as far as early 87 subjects. Alarmingly, all interviewed doctors said that detection is concerned. The results also indicate that there they do not use any ASD screening tools in their daily is openness toward a more multidisciplinary approach practice, meaning that many young children in the emirate (a closer cooperation and exchange of information with may remain undiagnosed and untreated. In addition, only other specialists such as clinical psychologists and speech- 26% of respondents indicated that there are workshops language pathologists working closely with autistic and trainings on ASD related subjects available for them individuals and their families).

13 U = 711.5; p <0.05 14 M = 65, SD = 12.38 15 M = 57.98, SD = 14.95 Early Diagnosis of Autism in the United Arab Emirates: Knowledge and Attitudes Among Primary Healthcare Providers Ras Al Khaimah

7 Recommendations for Key symptoms and detection, as well as the use of evidence- Stakeholders based early interventions.

This policy paper highlighted results from a study assessing It is critical, however, for such coursework not to the level of knowledge, perspectives and opinions about become part of general education (alongside computer autism spectrum disorder among those who are the first studies, Arabic, English, etc.). According to interviewed point of contact for children affected by ASD and their students and faculty, general education courses tend to families in Ras Al Khaimah, namely, pediatricians and be trivialized and neglected by the students (personal general practitioners. This study may be the beginning of a communication, 2019). Therefore, such subjects should be new body of research into autism diagnosis and therapy in introduced in the third (clinical) year for MBBS students, Ras Al Khaimah, the UAE, and the broader Gulf region. The as one of the core subjects. findings could have considerable managerial implications Continuing Education Courses for all decision makers and stakeholders involved. Public health professionals and policymakers should make The following recommendations could help implement regular continuing education courses on ASD and its early the much-needed changes and improvements of policies, symptoms in toddlers available and easily accessible for regulations, and guidelines, as well as inspire effective primary healthcare professionals in Ras Al Khaimah and the networking between local policymakers, researchers, and broader UAE. Special focus should be placed on providing medical practitioners on the subject of timely autism these opportunities for (1) pediatricians, (2) general detection and provision of early intervention services practitioners, and (3) nurses, as research suggests that they within the emirate and beyond. are often the primary point of contact for families with Regulated and Unified ASD Screening young children, providing initial information regarding Procedure developmental milestones, nutrition, immunizations, etc. Their role is also to build awareness with parents and Seventy-two percent of respondents indicated that they beyond, and to provide basic health education. do not have tools to diagnose ASD. When respondents were asked whether they use or are familiar with any Strategic Professional Group: Nurses autism screening tools, the answer was negative for all Owing to time and logistical constraints, it was not possible of 87 subjects. All interviewed doctors admitted that they to include nurses in the research. This is an important do not use any ASD screening tools in their daily practice, limitation of this study to be highlighted and addressed in although there is an obligatory ‘Autism Screening’ the future. Pediatric, psychiatric, and community nurses, procedure for every 18-month child in Ras Al Khaimah. as members of multidisciplinary teams, are expected to According to well-informed healthcare practitioners from provide holistic care and adequate counseling to children Ras Al Khaimah, the above-mentioned procedure is listed with childhood autism and their families. It is critical not as part of an obligatory checklist scheme. However, it is only to facilitate nurses’ education by providing continuing not clearly stated how the procedure should be conducted medical education on the subject of ASD, but also to and with what tools. There are no concrete guidelines introduce new contents into the basic curriculum as the provided. In reality, it was reported that the procedure is current curriculum does not include courses on screening, either skipped, or limited to a couple of random questions assessment, leadership, advocacy, and the practice of asked by a doctor to a visiting parent. Regulators should integrated nursing care of ASD (personal communication, provide unified guidelines with regard to this procedure, 2019). Nurses, if adequately trained on the subject, are in a listing at least one chosen screening tool that is available position to successfully conduct ASD screening procedures, 16 in the spoken languages of the populations being served. which could be a huge time-saver for doctors, making the Medical Education Curriculum Revisions entire ASD early screening procedure more efficient. Community Awareness Sessions Medical students in Ras Al Khaimah would highly benefit if additional coursework on ASD were to be implemented Early identification and diagnosis of childhood autism, and into the Bachelor of Medicine and Bachelor of Surgery subsequently early interventions and better prognosis for (MBBS) curriculum, with special focus placed on early the child, depend not only on the competence of medical

16 The author of this study suggests using Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHAT-R/F, Robins, Fein, Barton, 2009) as it is recommended by American Academy of Pediatrics (AAP), free of charge for doctors to download, and most importantly, available also in Arabic as well as in other languages widely spoken in Ras Al Khaimah (e.g. Tamil, Urdu, Hindi, Tagalog). In a study conducted in nine Arabic speaking countries by Seif Edin et al. (2008), M-CHAT proved to be an effective tool to use in the early screening of autism (Seif Eldin et al., 2008). Sheikh Saud bin Saqr Al Qasimi Foundation for Policy Research Sheikh Saud bin Saqr Al Qasimi Foundation for Policy

8 professionals such as pediatricians, general practitioners, Author and nurses, but also are strongly linked to attitudes and awareness of parents and the entire community. Having Agata Wentz is a clinical speech-language pathologist, emirate and nation-wide awareness and informational an early intervention therapist, a linguist and an campaigns would help build minimum, foundational educator. She is a PhD candidate at the Chair of Speech understandings of ASD, helping to combat misinformation and stigmas, encourage the development and prioritization Therapy and Developmental Disorders of the Pedagogical of resources, and ensure higher percentages of early University of Krakow, Poland. Her doctoral dissertation detection and diagnosis. Building parental and community focuses on the diagnosis of autism spectrum disorders buy-in is critical for building trust in the patient-provider in the United Arab Emirates. relationship and for creating and maintaining culturally specific methods of communication between healthcare providers and families. Acknowledgments Additionally, various targeted awareness-raising events and meetings could be organized for pregnant women, This research would not have been possible without young parents, siblings of ASD-affected children, and the support received from the Sheikh Saud bin Saqr various professional groups such as nannies and nursery Al Qasimi Foundation for Policy Research. I would like teachers. Suggested key locations for such events for medical workers and those that spend a significant to express my deepest gratitude to Dr. Natasha Ridge, amount of time taking care of newborns and toddlers Caitrin Mullan, and Holly Cook for their advice, support are: neonatology departments, outpatient pediatric clinics and words of encouragement. (private and public), public Ras Al Khaimah health centers, nurseries, or even popular shopping malls in order to reach I would also like to thank the following individuals a wider audience. for the information and invaluable help they provided Conclusion during my research: Autism is one of the most severe developmental disorders. Dr. Shukri Adam, Assistant Dean – Clinical Education, Pediatricians and general practitioners are a group of Assistant Professor – Nursing, Ras Al Khaimah Medical special importance because of the responsibility they bear & Health Sciences University and of the trust parents place in them, before they decide to consult other specialists (e.g. psychiatrists or neurologists). Dr. Azan Saleh Al Saadi, Acting Dean – RAK COMS, Parents turn to them first, and therefore their knowledge Ras Al Khaimah College of Medical Sciences, Ras Al must be adequate to help families recognize the first Khaimah Medical & Health Sciences University symptoms. The study conducted in Ras Al Khaimah showed that the knowledge of primary healthcare professionals is Dr. Sherif Ba’athallah, MD, Specialist A - Pediatrics dangerously insufficient to meet this challenge and that they should be continually educated on the disorder and Dr. Jean Marc Gauer, Chief Executive Officer and Head how not to miss its early onset in outpatient practice. of Surgery, Ras Al Khaimah Hospital

Dr. Vijaya Kumardhas, Dean, Ras Al Khaimah College of Nursing, Ras Al Khaimah Medical & Health Sciences University

Mrs. Carol Mathias, Senior Lecturer – Psychology, Student Counselor

Ms. Ilham Mohamed, Ras Al Khaimah Autism Center

Dr. Madian Mohamed, Ministry of Health and Prevention, Ras Al Khaimah

Ms. Prateeksha V. Shetty, Clinical Psychologist, Ras Al Khaimah Hospital Early Diagnosis of Autism in the United Arab Emirates: Knowledge and Attitudes Among Primary Healthcare Providers Ras Al Khaimah

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11 The Sheikh Saud bin Saqr Al Qasimi Foundation for Policy Research Policy Paper Series is designed to disseminate ongoing research to individuals and institutions interested in the development of public policy in the Arab world. Findings and conclusions are solely those of the authors and should not be attributed to the Sheikh Saud bin Saqr Al Qasimi Foundation for Policy Research.

The Sheikh Saud bin Saqr Al Qasimi Foundation for Policy Research

Developing Research, Supporting Minds

Based in the emirate of Ras Al Khaimah, the Sheikh Saud bin Saqr Al Qasimi Foundation for Policy Research is a non-profit foundation that was established in 2009 under the patronage of His Highness Sheikh Saud bin Saqr Al Qasimi, United Arab Emirates Supreme Council Member and Ruler of Ras Al Khaimah. The Foundation has three broad functions:

• to inform policymaking by conducting and commissioning high quality research;

• to enrich the local public sector, especially education, by providing educators and civil servants in Ras Al Khaimah with tools to make a positive impact on their own society; and

• to build a spirit of community, collaboration, and shared vision through purposeful engagement that fosters relationships among individuals and organizations.

Visit www.alqasimifoundation.com to learn more about our research, grants, and programmatic activities.

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